Wednesday, August 26, 2015

You've undoubtedly seen the "ice bucket fail" videos and mashups of people getting hit in the head with buckets, falling off something, or losing their bikini tops. These are hilarious, but not what I mean.

You see, I challenged NBA MVP Steph Curry and his 3-year-old phenom of cuteness, Riley. Steph went to my alma mater and since it’s a relatively small, close-knit community of alumni, I figured it was only three – max four – degrees separating me from him. Once all my friends uploaded their videos challenging him too, I figured it was only a matter of time before Steph acquiesced to our video appeals. The result would undoubtedly go viral and the dollars would flow to ALS-TDI and the Blazeman Foundation.

So far, none of this has happened. Some of my friends, including Pooh bear, have made awesome videos. Others are working back channels to try and get to Steph. I’m grateful for each one of these efforts, but the whole month has felt like one giant balloon of anticipation slowly deflating.

I’m not alone. Dr. Steve Perrin, CEO of ALS-TDI, said in an email last Friday that the organization has only raised $50,000 so far this month. Last year’s ice bucket raised $4 million, increasing enrollment from 25 to 300 people (including me) in their precision medicine program and invest $3 million clinical trials. With $50,000, they can expand the PMP by . . . two people.

Donations are down despite the spirited headlines last week touting the amazing research breakthrough at Johns Hopkins.

I’m dreading the ones at the end of this month reporting the disappointing money raised by the 2015 ice bucket challenge. Dismal little quippy puns, like “The Ice Has Melted.”

Were we in the ALS community wrong to focus our challenges on celebrities and giant swaths of people (all our Facebook friends or alumni from our colleges) instead of calling out specific friends and family members? Did we all expect to become Anthony Carbajal on Ellen?

I did, I’m ashamed to admit.

Or was it really just a one-time internet fad? Did people really miss the point? Were we wrong to believe that those who actually donated did so because they realized how awful ALS is? That they paused long enough to picture how devastating it would be to lose – one by one – the ability to walk, talk, swallow, use the bathroom, and breathe, leaving only their mind intact to witness their own death?

Yeah, it was a fun, social media game that celebrities and ordinary people alike could play. But the $220 million raised globally jumpstarted promising studies and clinical trials that had been languishing on researchers’ shelves due to lack of funding.

I want to reach out to each one of the scientists, look them in the eyes, and plead, “you’re using the money you have wisely, right?? Because that’s it, there’s no more where that came from!”

There will be more, of course, because people will still be getting diagnosed with ALS, and their loved ones will still be outraged that there’s no treatment beyond the one pitiful drug that extends life 2-3 months. After they pass away, they will continue to raise money in their honor. But maybe ALS will sink back into obscurity as football players go back to sporting neon pink gloves and Veteran’s Day parades take place as usual, oblivious that these two groups are most at risk for this deadly disease.

I know that most readers of this blog have donated to Team Drea, some many times over. And many have gone above and beyond to make sure that I know I’m loved (latest example, from Heather). I’m watching the scroll on my fundraising page now…it’s astounding. Please know that I am profoundly grateful to each and every one of you. I also realize that there are many important causes out there and money is always tight.

I’m just disappointed. And afraid.

Please, when you can, donate to ALS.net or the Blazeman Foundation where ALL the ice bucket money goes to ALS research. If we can make a breakthrough in one year, imagine what things could look like five years from now. I don’t get the luxury of looking that far into the future.

Saturday, August 15, 2015

I am now in full-on training mode for the City of Oaks marathon, which I got clearance to do on my trike (want to run
the half or join one of our Team Drea relay teams? contact me!)

So last Sunday, I convinced DP to drop me off at a trail nearby
while he ran some errands. For the local folks, I was on Beach Drive near Cinderella’s
castle the Mormon Temple. For the non-local folks, it’s a beautiful place to
ride – the trail winds between tall trees creating almost a full canopy. Since it was late in the day, rays
of sunshine streamed through from the setting sun. One on side of the trail is
a lazy tributary to Rock Creek, the other side is two-lane road which has more
bicyclists than cars on Sundays. If it weren’t for the ongoing hum and
occasional air brakes from the Beltway, it would have seemed like a ride
through deep woods.

No, I didn't take her picture. That would have been stalker-ish.

I was riding along enjoying myself when I saw her. The
perfect running specimen. Calf muscles tensing, arms pumping, ponytail
swinging. Not wearing the shapeless race t-shirt and mesh shorts I was in, but
a strappy fluorescent orange spandex top with sweat on her shoulders and fitted
black shorts showing off her cute figure.

I couldn’t help it – I followed her. I followed her, even
though I knew better. I felt the ache of my wound that won’t heal and tasted the bitterness in my mouth. I’m better than I used to be. For six months after
I stopped running, I could not see someone jogging without crying.

I watched in awe at the grace of her feet that innately knew
to push off the ground, her ankles carrying them effortlessly through the
stride, and toes naturally flexing just enough to position themselves to hit
the asphalt at the perfect angle again. Ah, the rhythm of running.

And yet, she wasn’t thinking about any of it -- the motor
neurons firing, the muscle fibers straining. She was listening to music through
her headphones, thoughts undoubtedly far from the neurological glue holding her
together, making this evening’s run possible. I never thought about it either.

I chased her for awhile, feeling very much unglued as I
tried to keep up with my uneven pedal stroke and legs shaking uncontrollably as
I bounced over little tree root earthquakes in the trail. Eventually, I watched
sadly as she turned off down another path, even though I knew it was for the
best.

Left alone again, I pulled my thoughts back into the trike
and actually had a pretty good time. The deepening shadows matched my mood and
I tried to focus on my own journey. The ability to be outside using my muscles
in any form was a gift, and I knew it. A deer and I had a brief staring
contest. She won by snorting. I jumped and laughed out loud.

I cruised back and forth on the trail within a couple of miles
of our starting point so I would be close by when DP came back to pick me up.
When that got repetitive, I ventured into an adjacent neighborhood and came
upon a hill with a long incline. It looked steep but doable so I decided to try
it. I changed gears and settled into cranking up the hill, using every part of
the stroke to press through my quads and pull up with my feet. This is my
favorite kind of riding (and living) – working hard but feeling the satisfaction
of getting to where I need to be. It’s a rarer feeling these days.

The street was mixture of ranches and modest homes with wide
lawns, all neat and tidy with freshly cut grass and shrubs maintained by the family
gardeners, not professional landscapers. It reminded of my neighborhood growing
up.

Up, up, up I went, from one intersection to the next until I
was afraid that DP would be mad that I’d strayed so far from where we’d agreed
I would go. So I looped around to check out my accomplishment. I was sweating,
breathing hard, and happy.

It looked similar to this, minus the cushion.

On the way back down, I let myself go. It felt just like the billy cart my dad made be 25 years ago –
basically a plank with 2’x4’s at either end and four lawnmower wheels. No
engine, no brakes. We were supposed to sit upright and steer with our feet, but
most of the time my friends and I lay down on our stomachs and steered with our
hands, our faces inches from the pavement as we whizzed full speed down the
hills in our neighborhoods without helmets. Life really comes full circle, I
thought. Even if I was happy I had brakes this time.

I was back on the trail starting mile 7 when DP called to
say he was back with the takeout and toilet paper. As I pulled a U-turn for the last
time, I saw the pop of fluorescent orange. The perfect running specimen! In the
distance, I could see DP waiting for me, lifting the hatchback of our Subaru to
load the trike. For once, I didn’t feel the ache. This is my journey and I
wouldn’t trade it. No way.

Friday, August 7, 2015

Last year, during the ice bucket challenge craze, I was seeking a second opinion of my probable ALS diagnosis. I received confirmation of the diagnosis on August 28, 2014. At 33 years old and less than a year after completing a half Ironman triathlon, it felt completely surreal to see more and more people talking about ALS. While videos from ALS patients terrified me, DP and I drew strength from the global show of support, and hope from the unprecedented funding being donated to ALS charities.

A year later, Team Drea has 75+ members and has raised more than $50,000 for ALS research from people who are swimming, biking, and/or running a race (or 12!) that represents a challenge for them. I am planning to do the Ramblin' Rose triathlon again, and do a full marathon on my recumbent tricycle.

What a difference a year makes.

There is no doubt that the ice bucket challenge has changed the trajectory of this disease. It was woefully underfunded and now researchers are beginning the most promising trials and studies they've been envisioning for years, but never had the funding to run. There is still a long way to go, but thanks to the ice bucket challenge, progress is being made.
From the very core of my being, I thank you for your donations.

And now for our challenge...here's the backstory you need to know. We went to Davidson College. Steph Curry, this year's MVP for the NBA, went to Davidson College. His daughter Riley Curry is an internet sensation because of stuff like this.

Davidson alumni: WE NEED YOUR HELP TO GET STEPH AND RILEY TO TAKE THE CHALLENGE! Please do the IBC, challenge them. and share widely.